A step-by-step guide on accessing SATIVEX
1. Ask your neurologist or MS nurse about whether they think Sativex might be beneficial for you.
2. Ask your neurologist or MS nurse about the process for accessing Sativex. This will vary depending on
where you live.
3. If your neurologist or MS nurse is unable to help you to access Sativex due to restrictions put in place by the health
authority but they think the treatment will be beneficial for you, complete the template letter available via the MS Society
Web-site and send it to your PCT/NHS Board/Health Board.
4. Once you have established what the local NHS policy is on Sativex provision, you may have to consider making an
individual funding request for Sativex.
5. If your individual request for funding is refused, you may wish to appeal the decision. Details of this process are
available via the same link.
6. If you are still unable to access Sativex, email the Society for MS Sufferers at firstname.lastname@example.org
or call 020 8438 0700 and ask for the Policy and Campaigns team.
7. You might also want to ‘get loud’ by involving your local MP or local press.
Sativex has not been assessed by the National Institute for Health and Clinical Excellence (NICE). This means that decisions on whether to prescribe Sativex will be made at a local level, and generally by a physician.
Sativex should only be prescribed under the supervision of a doctor experienced in the management of MS spasticity, and in most cases this will be an MS specialist neurologist but may also include rehabilitation specialists or pain specialists who regularly treat MS spasticity. Sativex may also be prescribed by GPs on the instruction of the specialist.
There are some MS drugs, like Sativex, that have been licensed and approved for use on the NHS but have not been approved by NICE. Without NICE approval, local health authorities have no legal obligation to provide you with access to the drug. Whilst there are fewer policies supporting your entitlement to MS drugs not approved by NICE, you can still (and should) make a case for access to these treatments.
Understanding your rights… The NHS ethos – patients have the right to expect that local funding decisions of drugs and treatments not approved by NICE will be made rationally following a proper consideration of the evidence. If the local NHS decides not to fund a drug or treatment that you and your doctor feel would be right for you, the local NHS is obliged to explain that decision to you.
You can make an individual request for Sativex… It may be the case that a local health authority or a primary care trust will take the decision not to prescribe it on a routine basis. If this is the case, then take matters into your own hand and find out what the policy is. If it is the case that the authority has decided not to prescribe you Sativex routinely, an individual request for the drug will have to be made on your behalf if you want to access the treatment. Individual requests for the product should be made by your specialist. The request should be accompanied by as much information as possible about why you and your healthcare professional think the treatment will be beneficial for you. It should be possible to assess whether Sativex is effective after a four week period of treatment. The health authority may therefore decide to provide Sativex for a preliminary four week period before making a decision about whether to fund the medicine long term. Demonstrating Exceptionality… Sometimes a request will only be considered for “exceptional circumstances” so you will be required to demonstrate “exceptionality” in your individual case. In these circumstances, it needs to be demonstrated that you are significantly different from the general population of patients with MS and that you are likely to gain significantly more benefit from the intervention than might normally be expected for patients with MS.
And remember – It will be very important to demonstrate that you have tried other spasticity medications that have not provided adequate symptom relief and/or have caused intolerable side effects. Highlighting the alternative treatment options available to you will also be necessary – if Sativex is not provided, intrathecal baclofen or botulinum toxin may be considered as options for treatment-resistant MS spasticity but are invasive and are associated with considerable costs to the NHS.
Making an individual request needs to have the following – make sure you include all that is relevant about your lifestyle – including these factors are of vital importance – for example, taking Sativex may allow you to be more independent, and lessen the need for a high level of care provision for certain daily tasks. If this is likely to be the case for you, this should be highlighted in your request for Sativex. This is just one example; many other factors could be taken into account. Sativex is not effective for everyone; this is why it is so important to show in your request why you and your healthcare professional think Sativex will be effective for you and how it will improve your quality of life to a greater extent than for the general population of people with MS. Your request for Sativex will usually be considered by a panel, the name of which will depend on the internal structures that are in place in that particular health authority. Once the panel has considered the request, a letter will usually be sent to you and your doctor communicating the panel’s decision and their reasons for making this decision.
For more information please visit MS Society
(Please check for updates on the above site)
Originally Published in Weed World Issue 96
Photo Credit – Pixabay